10 Survival Tips For A Caregiver Whose Spouse has Terminal Cancer

When a spouse or significant other is diagnosed with advanced, terminal cancer, the caregiver is set on a journey that he or she never asked for. The winding path can pose challenges. That said, speaking from my own experience as a caregiver to my husband, Bob, who was diagnosed with advanced colon cancer, I learned that the only dimension I could control was finding ways to make the “unbearable” bearable. The following slides offer tips for coping and surviving the experience of caring for a loved one with terminal cancer.

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Tip 1: Anticipate burdens to plan accordingly

Many households meet costs of living because both partners work full-time. As a partner’s ability to work is compromised, financial stress increases. That often means the other partner, while working full-time, must take care of a partner who is increasingly dependent for help with eating, bathing, walking, etc. The impact is physical and emotional, resulting in caregiver fatigue, frustration, anxiety, and depression. The good news is that you can act to decrease the intensity of the ill effects.

Whether it’s walking, running, tennis, or swimming, physical activity boosts mood and attitude. Even while caring for my husband, managing full- and part-time employment, and taking courses to complete a nursing degree, I forced myself to go to the YMCA at least twice a week to plow through the Olympic-size swimming pool at least 50 lengths. It decreased my level of anxiety and depression and improved my ability to sleep, and that’s a known benefit.

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Tip 3: A hobby or favorite game is welcome distraction from burdensome reality

My escape was playing mindless computer games. Winning gave me a sense of feeling in control. The games freed me from worries and concerns — and advancing to higher levels satisfied my desire to win. For some, the escape might be knitting or painting, sewing, or watching comedies. It doesn’t matter what it is as long as it’s something you enjoy that carries you away from the nagging questions without answers. Distraction from unexpected downturns and complications are beneficial.

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Tip 4: Communicate with people going through something similar

Thanks to online resources provided by the Colorectal Cancer Alliance, I gained a wealth of knowledge on multiple topics. By speaking up and asking questions, bits and pieces I had gathered from busy clinicians and numerous books were fleshed out in great detail. The added benefit was gaining multiple perspectives and support. I no longer felt alone.

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Tip 5: Reach out to friends and neighbors to help reduce the burden

Friends may not know quite what to say, which is to be expected. Don’t be discouraged by awkward statements from a few. Many others are ready to offer support. It’s OK to ask for help with transportation and to accept an offer from a neighbor who would like to run errands. I had to be creative because most relatives and friends have jobs. I asked my retired prior spouse to take my husband to chemo. I covered gasoline costs, and the two, my ex-husband and current husband, became friends.

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Tip 6: Make recordings of your loved one speaking to individual family members

When my spouse finally lost his battle with terminal colon cancer, I remember feeling suddenly angry with myself for not having made recordings in which he talked about himself, his life, his feelings, or anything he would have wanted to share. That loss hit hard, and if I ever face that situation again with someone else, I will be sure to make recordings.

While I sat by my husband’s hospice bed as he lay dying, I told myself his misery was ending. As his breaths grew further apart, and finally ceased altogether, I was offered time alone with him, which I took. Before they took him away, I asked for the hospital gown he had worn that day — his smell had permeated the cotton. For months, I wore his wedding band on a neck chain and slept with the cotton gown on my pillow until his smell was gone. It was more comforting than I can possibly say.

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Tip 8: Stay busy after the loss

Staying busy was very, very helpful. Preserving my career, education, and routine, an important part of which was devoted to my three beloved labrador retrievers, was tantamount. I kept up my lap swimming and volunteer work as well. At first, waking up was painful because the loss came flooding in as if I were feeling it for the first time. There were times when it was difficult to participate in a meeting without welling up — to prevent that, I would take anti-anxiety medication an hour before the meeting.

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Tip 9: Communicate honestly and openly to build bridges and bonds

If someone didn’t know about my loss, I told them. I enjoyed talking about my late spouse and his aspirations, as well as the fact that his death could have been prevented with screening and surveillance. My husband’s childhood colitis had increased his risk for colon cancer, and we were caught by surprise. I became an expert on colon cancer guidelines and resources for clinical trials testing promising new therapies. I gained peace in raising awareness.

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Tip 10: Share the knowledge that could have saved your spouse’s life with others

I reached out to inform as many people as possible that colon cancer is preventable with screening based on one’s level of risk. It’s important to know and understand risk factors. And it’s important to follow screening recommendations, which, along with types of screening tests, impact of age, and the importance of knowing one’s family and personal history, are also key. Helping others allowed me to take positive action in honor of my late husband.

Judi Ebbert earned her PhD at the University of South Florida’s College of Public Health. She has worked at three NCI-designated comprehensive cancer centers and is a writer/editor at Moffitt Cancer Center. Judi has great interest in chronic disease prevention and treatment, and is an advocate for equitable access to care and optimal quality of life for all people. She loves swimming, her dogs and cats, great food, art, humor, and cinematic thrillers. She’s on Twitter @judithebbert.